Question for EmH about Long QT Syndrome

Yesterday my 9 year old went to the cardiologist to have more tests done about his hole in the heart. They did another ECG and then he told me that he is concerned that he might have Long QT Syndrome. I am still a little shocked and we won't know for quite some time for sure. He needs 2 more ECGS in the next couple weeks plus stress ones too. They also did a DNA test or something to see if it is genetic. I guess sometimes the QT becomes prolonged when there are certain types of holes in the heart and that after surgery the QT goes back to normal. I wasn't given much info and I am pretty concerned. I have done some searching and just because an ECG says borderline Long QT it doesn't mean he has it. I am also concerned because I have read that asthma meds and Long QT meds don't mix. Any help would be greatly appreciated. We aren't seeing the doc for another 4 days and I think I am going to lose my mind.

Thanks, Stevie

1 Reply

  • Hi Stevie,

    Sorry to hear that your son is still not well, you must be very worried. How is he coping with all the tests and things; it must be hard when he is so young.

    It sounds like you don't have all the results of the tests back yet, so I'm sure the cardiologist will be able to give you a better idea of what's going on and more info about the condition when everything is done. There are a few different forms of long QT and other things that can mimic the condition, and as you say the ECG is not diagnostic, so it's important to get all the other tests back first.

    The important thing to remember, if it is Long QT, is that this condition is most dangerous when it is not detected or known about and therefore not treated. Your son is being investigated and will be treated. There are several treatments available and the cardiologist will be aware of his medical history and will choose the most appropriate one.

    I'm sorry I can't be of more help but it is quite difficult (and unwise!) to give specific advice without knowing all the details. I know it's easier said than done but try not to worry... it sounds like your son is in the hands of a good cardiologist and I'm sure he'll give you more info when the test results are all back.

    You and your family are in my thoughts and prayers

    Take care

    Em H

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